Tuesday, August 10, 2010

On Lea's Terms

As I said previously, this summer I am volunteering at a program for autistic kids, run by a group of behaviorists from whom I got help as a child. Working with the kids can be really fun and rewarding, but sometimes, the other staff talk about the kids in a way that confuses and distresses me.

Take, for example, Lea (all names are changed). Lea is maybe 9 years old and she’s bilingual, which I think is really cool. She’s autistic, and she also has selective mutism, which is a kind of insensitive term meaning that there’s nothing physically keeping her from speaking, but she often doesn’t speak anyway. The staff where I work decided that actively pushing Lea to speak might upset her and make things worse, but learning to use speech more often was one of Lea’s long-term program goals.

Anyway, lately Lea is speaking more and more, which everyone is pretty happy about. But one of my coworkers seemed to have a problem: “It’s great that Lea is talking now, but she only wants to talk on her own terms.”

For me, communication – how and when one communicates, and what one wishes to say – is an intensely personal thing. I see nothing wrong with someone wanting to regulate their own communication. I understand the need to teach kids when to be quiet and listen when other people are speaking, but this wasn’t just about that – my coworker seemed to feel personally insulted by Lea’s desire to decide for herself when she speaks and when she is silent. Talking should be on adult terms. Talking should be on neurotypical terms. Talking should not be on Lea’s terms.

When my coworker said that, I think she was worrying about the non-verbal communication exercise. This is like a big silent art project, in which one kid, using only gestures, directs another kid in how to lay the paint and glitter out on the paper. Since non-verbal communication is difficult for many autistic people, including Lea, some of the other staff were worried that Lea would use her newly-available spoken communication instead.

She needn’t have worried. Lea was silent throughout the activity, although she had a lot of difficulty with the gestures. Her partner was Alice, the neurotypical sister of one of the autistic boys in the program. Alice seemed outraged that Lea was having difficulty understanding her directions. She angrily shook her head and stamped her foot when Lea made a circle instead of a dot. She held up her little hands and aggressively mouthed What? What? when Lea lost focus and stopped giving non-verbal instructions. A few times Alice even broke the no-talking rule to tell Lea that Lea wasn’t doing it right. I couldn’t tell what Lea was feeling, but to me she did not look happy.

“Alice was rude to Lea today,” I pointed out to the other staff, as we sorted the art supplies after the kids had left. “Does Alice have goals?”

“Oh, no, Alice is – Alice is typically-developing,” said my coworker. “She kind of sets an example for the other kids, right? She doesn’t have goals.”